Thyroid and Therapy 

These two things don’t normally go together but I thought I would give an update on Eli’s progress. 

We have started private therapies since Eli aged out of our state early intervention program. We now go to a facility twice a week for his services. 

We have been very blessed to not have a lot of extra appointments or doctors added to our life. We know that. Yes, we have additional things we have to do because of Down syndrome but in general we haven’t had the experience of driving all over town for appointments…until now. 

I don’t think anyone really told me how big turning three was. I knew Eli would go to school and I knew he would lose services but I didn’t realize what we would be adding. I worried about how it would all work out constantly. But now that we are in it, we have some adjusting to do. 

School / Therapy 

Private schools and private therapies are crazy expensive. About 6-8 months prior to his third birthday, we began to really dive into our options. My parents have been gracious enough to offer to cover tuition for private school for Eli and Ruby. Obviously most people don’t get quite that lucky and we feel super blessed. Eli and Ruby will both attend a private inclusion play-based preschool twice a week. Eli will attend PPCD three times a week in addition to that. He’s a busy boy! But inclusion was an important component for us and Ruby will definitely benefit from the challenge. If it becomes too much for Eli, we will consider only attending PPCD for him. But for right now, this is the plan. 

We have ended our ND program for now. It’s very expensive and Eli is getting so much therapy as it stands. Also, our therapist is no longer coming to Texas so it was time. The universe said so and we accepted reluctantly. 

Private therapy has begun instead. We had applied for Medicaid for Eli twice before. Once because we were told that Eli automatically qualified based on his diagnosis. This was false. We were denied twice because the program is income based. When we applied again 6 months ago, our family situation had changed. We have two more children and one less income. The third time we applied, I decided to try for Medicaid Buy-In. This time, it seemed that Eli’s Down syndrome was actually a factor. We were approved for that and HIPP Texas. We pay a small monthly premium for Medicaid and it covers all his therapies. To put this into perspective, we got a phone call from the therapy facility prior to attending his evaluations. The call was to inform us that the three evaluations were going to cost us just under $1,000…which is obviously an incredible expense. Not to mention the cost of attending weekly sessions. But Medicaid stepped in and covered what our private insurance didn’t cover. What a huge blessing! I’m blown away still. 

Medicaid doesn’t cover anyone else in our family, which is why I think his diagnosis was a factor here. But either way, all we wanted was to make sure his therapies were taken care of and that we were getting him the best we could offer. He couldn’t go without therapies and while PPCD does work with him, that time is limited. 

The private facility offers experiences we can’t give him home or school. They have equipment we don’t have access to and what seems like limitless access to tools and materials we have only dreamt of. It’s also a good thing for my family. It challenges Ruby outside of the house, creates a routine, and gets us out and about. While it means we are less available and busier, it’s a positive overall. 

PPCD has been great. We are two weeks in and have already seen some positives. Eli is a little less shy and more flexible. He seems a little more social and is playing using his imagination more. He has said “mama” without prompting and imitating more noises and sounds (including the “lalala” sound which we have never heard before). School is great and we couldn’t be more thrilled. It’s the first thing Eli wants to do when he wakes up and that makes my heart happy. 


Health / Supplements

So far, we have spent a lot of time working with our local DS clinic as well as our pediatrician, ENT and naturopathic doctor. This seems to meet all of Eli’s needs for now. Our big focus has been on his thyroid and growth. Eli has high vitamin A levels and we are looking into wycwe are supplementing T3 levels. Because of this, we are stopping all our previously used supplements and looking into other options that specifically target what his blood work indicates is needed. It was a scary thought initially but I have to admit to myself that these supplements are designed to make Eli healthier and beyond that I have seen no difference between Eli on supps and off supps. Has he been healthier? Yes. Does it make him smarter or cure Down syndrome? No. Do we want the best vitamins that his body actually needs? Absoluteky! That extra chromosome means he processes things so differently than we do so I want to get it right. 

We have continued cranial sacrial work as well which is great just for sensory if anything else. 

The last thing we are looking to explore (slowly) is growth hormone. We know that his height isn’t really that big of a deal and I’m a small person to begin with. If he is going to be small then we are ok with that. But his dad is tall, and Eli at age three is in the same shoe size as his 1 year old brother. So we feel like this is something that needs to be addressed. We will be gathering more research and working with our doctors before making any moves. 

There are days it feels overwhelming to have to consider all of this, but there are far more days where it’s worth it because I see how well he is doing and how amazing these opportunities are to make sure Eli is at his best always. 

Are we busier now? Yup! But it’s a good busy. We were ready for it and I feel good about these changes (no matter how many times I whined and worried to everyone else). You were right. It’s all good. 

Thyroid and Therapy

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We recently began the journey to improve Eli’s thyroid. This was a difficult decision to make because, like supplements, it’s a slippery slope to more supplements, pills to remember, research research research (that I don’t have time for!) and one more thing that makes Eli different.
It also required blood work and a doctor who would support us.
Eli has had his annual labs every year with no glaring issues and concerns. His thyroid at age 2 showed subclinical hypothyroidism but no one we spoke to would treat it. Eli has many symptoms of thyroid problems but we were continually told that it was just Down syndrome and not thyroid.

So we waited and researched what we could.
Eventually I found Dr. P who, upon looking at Eli’s labs, felt we needed more bloodwork and thyroid treatment.
After more waiting and saving money to afford Dr. P and her consultation, we are finally on a good path.
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Eli began Naturthryoid 8 weeks ago. His initial labs were within normal ranges despite presenting many symptoms of hypo. We are striving instead for optimal numbers and already seeing the benefits.

Since beginning treatment, Eli’s attention to detail, his attention span and his processing has all improved.
He’s grown 1/2 and inch and gotten a new tooth. His health has been good and we feel like he has been able to get over illness that he wasn’t able to before (instead of a minor cold turning into a sinus infection every time).

We just had our follow up blood draw last Monday, which was part of my fear. I was worried they would find something wrong, that we would then be forced into looking at more supplements (because while A works well, A works better when combined with B but A and B can’t be taken at the same time and really it’s even better if you add C but B and C can cause a risk for seizures so we need to run MORE labs to check levels…blah blah blah…it gets crazy).
But to my surprise the dosage the doctor recommended is perfect, and we will actually be adding a new med for T3 support. (So Liothyronine in the AM and Naturethroid in the PM).
Even better? This blood draw was by far the best one we have ever had.
Typically they stick Eli in the arm they think is the best, and nothing comes out. They dig around for what feels like forever before giving up. Then we stick him in the other arm which gives blood drop by precious drop and we can never have all the labs we want because he never fills a tube.
This was huge.

So right now, in the moment, I couldn’t be more thrilled with the results we have seen. I wish we could have done it sooner and I would urge all parents to strive for optimal levels and fight or a doctor who will support you.
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On the therapy front, I feel like we are winding down and gearing up all at the same time. Our therapists are preparing us to age out in THREE MONTHS, trying to update new goals, and pushing Eli even harder than before. I don’t know what we will do without them.

We are currently working on self help skills like dressing, and potty training.
Apps we are using:
http://www.pull-ups.com/potty-training/time-to-potty-app-page/1226
https://itunes.apple.com/us/app/potty-time-with-elmo/id525507410?mt=8
https://itunes.apple.com/us/app/potty-training-time/id473203652?mt=8
DVD:
http://store.signingtime.com/potty-time
Potty training accessories-
http://www.amazon.com/3–Toilet-Trainer-Potty-Seat/dp/B000VY1WPC/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1422894463&sr=1-1&keywords=3-in-1+Toilet+Trainer+Potty+Toilet+Seat
Self help-
http://www.amazon.com/dp/B00168CPQM/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IBHFC55867TIS

We are looking at iPad apps to help with communication.
Apps-
http://www.nikitalk.com/
http://www.assistiveware.com/product/proloquo2go
http://www.speech-ez.com/
http://www.geminii.com
https://itunes.apple.com/us/app/i-hear-ewe-animal-sounds-for/id304093970?mt=8
https://itunes.apple.com/us/app/articulation-station/id467415882?mt=8
https://itunes.apple.com/us/app/smalltalk-phonemes/id384170714?mt=8
DVD-
http://www.amazon.com/dp/B006G18XN8/ref=wl_it_dp_o_pd_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=IKOUPJ72CJBP0
http://www.amazon.com/dp/B000Y1NNH2/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1LRF5GW126UR4

Eli has gone down to two PT visits a month and we are working on some of the same skills (clearing stairs and thresholds without sitting down, climbing play equipment independently, and keeping his knee from popping back), but we have also added riding a trike to the list.

In OT we are focused on opening closures, comparing and sorting, and fine motor activities including play doh and theraputty.
http://www.discountrehabsupplies.com/s.nl/it.A/id.2864/.f

SLP is working on following directions and some of the same stuff that OT is working on.
Balance Board- http://www.amazon.com/dp/B000N40SDC/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=KUQSNGCK0519&coliid=I1VQGPD35HCDPY
and more walking for breath support.
We are also working on blowing- so blowing a kazoo, blowing tissues and cotton balls across the table, blowing a pinwheel…he’s recently learned to blow his nose, but only when he wants to 😉

SLP has been the biggest challenge and it feels like the area we have made the biggest strides in and yet made no progress at all…if that makes sense.
Since beginning the Gemiini program, Eli has started to pay attention to our mouths when we speak, began babbling again, he has better lip closure, is copying “fish lips” and doing tongue play. He is making a roaring bear sound, and he’s saying “mmmmm” for “more”.
He has also said “mama” and “dada” a handful of times and is a bit more social around new people (waving, showing people with his fingers how old he is, and generally being more loving and comfortable around others). This is big! It’s not words, it’s not talking. But it’s HUGE in our world.
http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html
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Eli has his first assessment with the district tomorrow, so I am sure I will be updating on how that goes. I’m nervous and excited at the same time.
Happy Monday, friends! 🙂

Subclinical Hypothyroidism

Just got back from an Endo follow up for Eli. I feel frazzled- I *thought* the appointment was a follow up for PT and OT eval but had to totally switch gears when they handed us new patient endo paperwork. My brain didn’t want to do that. lol
Anyway, I wanted a second opinion on the levels we got from his pedi and was hoping to speak to someone who specialized in children and Down syndrome. No such luck, as I am sure you can imagine.
The endo did confirm that Eli has subclinical hypothyroidism (SCH) but stated that all his symptoms could be linked to anything and it is controversial to treat this in children. She also stated that he was growing fine (according to the DS chart, which we don’t use…) and that because it is a lifelong medication they would rather not give him anything. Even though it is likely he will have hypothyroidism later and be on meds forever anyway. (DS and Thyroid)

Eli’s symptoms: thinner hair, delayed tooth eruption, mottled skin, poor eating, poor growth.

I’ve gotten to the place where I don’t even want to offer Eli any food. It takes us 45 minutes to feed him, he refuses to self feed and he’s loosing weight. I just want to cry, honestly. Right now my awesome husband is feeding him lunch because I just couldn’t do it. Stupid, I know. But it stresses me out that he won’t eat and to be told it’s normal and that he will eat when he is ready is a load of bull. My kid won’t eat. Period.

It would just be nice to be treated fairly instead of just “oh well, he has Down syndrome” or “he’s too little”. Just like the issue with his sleep apnea. No one will treat it or help us help him.
(Granted, now that my kind can actually breathe, I honestly don’t think he even has it, but it would take retesting to find out for sure.)
It’s so frustrating!

I called the Down syndrome clinic to see what the doctor says about SCH and we will go from there. I know our naturopathic doctor will treat this, but we have run out of the funds it will take to see her at the moment. Awesome, huh?

I did some research on my own and haven’t found much supporting our decision to treat SCH- most says children will outgrown it and little of the research represents children with DS. So it’s a grey area.
All I know is that I want the best for my kid and that doctors suck butt. lol Anyone have any feeding tips or thyroid experience?

EDIT: Ok, I’m feeling better lol. Barry got him to eat lunch and I offered him the dinner he refused yesterday at dinner today. He ate it fine with no problems. -_- We are going to try whole milk, pediasure, and some juicing to get him the nutrients he needs. We already add coconut oil and vitamins to his meals, so this isn’t a big change and adds calories. I will also be looking into more work with our OT and ST. Thanks for all your concern! 🙂